September 3, 1979 – October 24, 2022
I first learned of a 2 1/2-year-old child from Illinois during the summer of 1982 while at the North American Council on Adoptable Children (NACAC) conference. At these conferences there are binders and binders full of children who are eligible for adoption. Derek’s adoption had been finalized and I had the urge to add another child to our family – a child with physical challenges. It was at this conference I learned of Sean. As soon as I returned home, I met with my social worker and showed her Sean’s picture and the short description about him.
She agreed to call his worker in Illinois for more information. During that initial phone call, we were told that Sean was to be placed with a family the following week. We didn’t leave any contact information and I decided to look into another child I was interested in, Rusty. As many of you know, Rusty and then Ben joined Derek and me to expand our family.
Then at yet another NACAC conference in 1984, I was flipping through the binders and sort of wasting time when I came across a child in Illinois named Sean. I didn’t have his listing number with me but I was almost certain this was the same child I had inquired about and was told he would be placed with another family. When I arrived home, I immediately compared the listing numbers and they were the same. What was I to do? I already had Derek, Rusty, and Ben to care for. Yet, I couldn’t just leave this child without an adoptive family to provide him with a permanent home.
Once again, I shared with my social worker and we decided it wouldn’t hurt to at least make a phone call. We learned the first family had backed out at the last minute and since we hadn’t left contact information they had no way of contacting us. Arrangements were made to do a pre-adoptive visit in March of 1985. I loaded up our van with Derek, Rusty, Ben, and a friend Marsha to make the drive to Illinois. What a drive that was! There was a big storm with lots of rain and extremely strong wind. I found a place near a building to pull over the help prevent the wind from rocking the van. We waited until things calmed down and then went on our way.
We finally arrive at our hotel to spend the night. The next morning once everyone was up, dressed and had eaten breakfast, we loaded up and drove to the foster family’s home to meet Sean and his social worker. As with Derek, Rusty, and Ben, Sean liked to roll around on the floor. Instead of unloading all the wheelchairs, we simply carried the boys from the van to join Sean on the floor. After our visit was cut short because Derek struggled to breathe because of cigarette smoke, we returned to the hotel and with Sean in tow to spend the night with us.
Sean, Rusty, Ben and Derek arrive at the hotel
I remember a lot of smiles, Ben cuddled in bed next to Sean. Rusty playing a game of pulling off Sean’s socks. Derek visually taking it all in with his approving smile. We just hung out in the hotel room, took our time eating whenever we wanted and whatever we wanted. Well, that sounds rather easy but it was more challenging than you think. Derek and Ben needed to have soft, ground foods and to be completely fed by others. Rusty and Sean could chew some and feed themselves finger foods but needed help with holding their cups for liquids or foods that required use of utensils. All the boys needed to be positioned in their wheelchairs, with their wheelchair trays on, and each helped in whatever way was needed. This should have been an eye opener of what to expect should Sean join the family. However, I don’t recall it ever crossed my mind at then how time consuming and how much work it would be to provide nutrition to these four boys on a daily basis.
The following morning after everyone was up, dressed and finished with breakfast, I left Derek, Rusty and Ben at the hotel with Marsha while I returned Sean to his foster home. After saying my good-byes to Sean and his foster family, I returned to the hotel to load up the van and we started our long return trip home to West Virginia. We talked about Sean as we traveled. Derek and Ben gave their approval of having him join the family if the social workers felt that would be in the best interest of Sean.
After we returned home. I pretty much left all the decision making in the hands of the social workers. After several phone calls, they felt Sean would do well in my family and completed all the necessary interstate paper work for Sean to move to West Virginia. I soon boarded a plane and flew Illinois to bring him home.
Sean and Derek hanging out after Sean arrives in WV
Since it was close to the end of the school year, we decided not to enroll Sean in the school program that Derek, Rusty, and Ben attended. Perhaps this would make for a better opportunity for Sean and me to form a bond. Once again I questioned the reason why a child who had been living in the same home from birth would be uprooted from the people he knew. Here are some of the reasons I was given: tension and disagreement between the foster parents, jealousy among the foster parents’ children because Sean required more attention because of his care, not able to get out in the community because family had no wheelchair van, little follow through with therapists recommendations, frequent respiratory infections (partly due to ongoing exposure to cigarette smoke), little encouragement to develop independent skills with feeding and toileting. At any rate, Sean joined us and seemed to be happy to be with Derek, Rusty, Ben, and myself.
Sean and Rusty became close as brothers
Ben and Sean enjoying the fireworks
So, over the years, Sean learned to feed himself, use various communication devices, and drive a power wheelchair. He also endured several orthopedic surgeries. Of course, he had his favorite foods and loved to be around females. After his high school years, Sean was active in his adult day program. I might mention that Sean liked to move slowly and at his own pace. For example, one day we loaded all our sons into two vans to attend an event. Well, we thought we had loaded all of our sons into the vans but as we drove down the hill from the house, I wasn’t sure we actually had everyone. I tooted my horn at Jim who was ahead of me and asked if he had Sean in his van. Nope, he didn’t and he also didn’t have room to fit Sean’s wheelchair in. So, I turned around and went back to the house and there was Sean waiting outside the front door for his ride! After that experience, I made more of a point to make certain Sean was with the group.
As a young adult, Sean, along with Rusty, made the transition from our family home to an adult care home in San Jose. This separation seemed to be more difficult for me than for my sons. It was emotionally draining for me to let them go and think of others providing their care. However, Sean did well, continued to go on outings and even on week-long summer vacations with his house friends and caregivers.
Rusty and Sean on vacation
Celebrating birthdays continued at the care home
Jose and Sean
Jose and Sean loved to hangout and lean on each other at their day program
Cool guy wearing his shades
After spending several weeks in the hospital in August, it was learned that Sean had untreatable bladder cancer. He would enter hospice care but could not return to his care home without special permission from the licensing agency. We did not want to transfer him to a skilled nursing facility. So, I invited Sean back to the family home and provided his care until the care home was able to have him return. It was a bittersweet time for me to have Sean here. We were able to reconnect seamlessly and our communication was still intact. After a little over two weeks, and before Sean left the living room, we had a short private moment when I could thank him for coming to spend time with me. Sean very much wanted to return to his ‘home’ and he ever so slowly, but under his own power, drove his wheelchair one last time down the ramp and out the front door of the family home.
Sean leaves the family home on September 14, 2022
Sean left us knowing he was loved. Once again, this separation was hard because I was aware it was final. However, the second time around, I knew Sean was the person ready to go and he helped make the decision.
